Yu ɔ sɔmbɔdi na yu famili gɛt Ɛmofilia A? If na so, yu go mɔs no gud gud wan aw i nɔ kin izi fɔ stɔp fɔ blɔd ivin if yu kɔt am smɔl, ɛn i nid fɔ tek injɛkshɔn ɔltɛm. Dis na rili prɔblɛm we de chenj wi layf. Bɔt naw, wan nyu mɛrɛsin de we dɛn kin yuz fɔ mɛn dis sik, ɛn dɛn kin yuz am jɔs wan tɛm insay di wik. Tide, wi de tɔk bɔt da drɔg de we dɛn kɔl Altuviiio.
Wetin na Ɛmofilia A? Aw Altuviiio go ɛp?
Fɔ tɔk am simpul wan, ɛmofilia A na wan sik we de kɔmɔt frɔm di mama ɔ papa to di pikin. Pɔsin we gɛt dis sik gɛt rili lɔw lɛvɛl na Factor VIII, we na wan impɔtant prɔtin we de ɛp fɔ mek blɔd klɔt.
Tink bɔt wi blɔd lɛk di mɔta we de ol wan wɔl togɛda. We wund apin, dis mɔta nid fɔ tay togɛda fɔ lɔk am. Factor VIII tan lɛk di siment we de ol dis mɔta togɛda. Bikɔs pɔsin we gɛt ɛmofilia A nɔ gɛt dis ‘simɛnt’ (Factor VIII), i kin tek lɔng tɛm fɔ stɔp fɔ blɔd we i de kɔmɔt frɔm wund.
di kכndyushכn kin bi sכmtεm, mכdarεt, כ siriכs, dipכnt pan di lεvεl fכ factor VIII. Bikɔs di sik na tin we pɔsin kin gɛt frɔm in mama ɛn papa (X-linked), i kin bɔku pan man dɛn, ɛn dɛn kin si di wan dɛn we rili bad. Uman dɛn kin gɛt dis sik bak, bɔt di sayn dɛn we dɛn kin gɛt kin smɔl.
Pɔsin we gɛt siriɔs ɛmofilia kin blɔd na in jɔyn, mɔsul, ɔ insay pat pan in bɔdi fɔ no rizin, nɔto jɔs bikɔs i kɔt smɔl. Wi kin kɔl dɛn tin ya "spontaneous bleds." If dɛn nɔ trit dɛn tin ya fayn, dɛn kin pwɛl pɔsin fɔ lɔng tɛm ɛn ivin mek pɔsin in layf de pan denja.
di tritmεnt we dεn kin du na fכ injεkt rεkombinεnt fכktכ VIII protin, we dεn kin mek na labכtכri. Dɛn kin yuz dis tu we dɛn:
1. "On-demand" tritmɛnt: Fɔ gi di injɛkshɔn nɔmɔ we blɔd de kɔmɔt fɔ stɔp am.
2. Tritmɛnt fɔ mek dɛn nɔ gɛt blɔd: Fɔ mek dɛn nɔ gɛt blɔd pan di wan dɛn we gɛt bad bad sik, dɛn kin gi dɛn kɔntinyu injɛkshɔn pan wan tɛm we dɛn dɔn sɛt (fɔ ɛgzampul, tu ɔ tri tɛm insay di wik).
Dis na di say we Altuviiio de kam in. Pan ɔl we bɔku pan di factor VIII mɛrɛsin dɛn we de naw nid tu ɔ tri dos fɔ wan wik, Altuviiio na wan tɛm insay di wik. dis na biכs in spεshal protin strכkchכ (`Fc-VWF-XTEN`) de alaw di fכktכ VIII fכ stebul εn aktv insay di bכdi fכ lכng tεm.
Aw yu kin yuz dis mɛrɛsin?
Altuviiio na wan likwid mɛrɛsin we dɛn kin gi insay wan vein. Dat min se, na IV (intravenous) infushɔn. Bɔku tɛm, na pɔsin we de kia fɔ wɛlbɔdi biznɛs na ɔspitul ɔ klinik kin gi dis.
Bɔt if yu want, dɛn kin tren yu ɔ pɔsin we de kia fɔ yu fɔ gi dis mɛrɛsin na os. Yu fɔ tɔk bɔt dis wit yu dɔktɔ fɔ disayd if dis na opshɔn fɔ yu.
Di mɛrɛsin bɔks gɛt wan vayl we gɛt paoda, wan sirinj we gɛt wata, ɛn ɔda tin dɛn we yu nid. Fɔs, yu nid fɔ miks di paoda ɛn di wata fɔ mek di mɛrɛsin kam bak. Fɔ du dis, yu nid fɔ yuz spɛshal adapt fɔ injɛkt di wata we kɔmɔt na di sirinj smɔl smɔl insay di vayl. Dɔn, yu nid fɔ swirl di vayl smɔl smɔl fɔ mek di paoda sɔlv ɔl. Neks, yu nid fɔ drɔ di wata bak insay di sirinj.
Di tin we impɔtant pas ɔl: Luk gud wan bifo yu yuz di mɛrɛsin. Di wata we dɛn dɔn pripia fɔ klia, nɔ gɛt kɔlɔ ɔ layt yɔlɔ . Nɔ yuz am if i gɛt ɛni blemish ɔ patikyula. Di mɛrɛsin we dɛn dɔn pripia fɔ yuz insay 3 awa.
Yu kin nid mɔ pas wan vayl fɔ di doz we dɛn dɔn gi yu. If na so, yu go nid fɔ jɔyn di mɛrɛsin frɔm sɔm vayl dɛn to wan big sirinj we yu dɔktɔ go gi yu.
We di doz dɔn rɛdi, dɛn kin tay wan spɛshal tiub to di sirinj, we dɛn kin kɔnɛkt to nidul we dɛn put insay di vein. Dɔn dɛn kin swɛt di sirinj smɔl smɔl fɔ injɛkt di mɛrɛsin insay di bɔdi. Dis kin tek ɛnisay frɔm 1 to 10 minit.
Wetin na di patikyula risk dɛm wae dis mɛrɛsin kin gɛt?
sכmtεm, wi bכdi de mek sכmtin lεk ‘fεta’ εgεst dis Factor VIII protin we dεn de gi na do. We wi de tɔk bɔt mɛrɛsin, dɛn kɔl dɛn tin ya inhibitor ɔ antibodies. If dεn inhibito dεm ya fכm, dεn de pwεl Factor VIII, we de mek di dכg nכ de wok bכku.
I nɔ klia yet aw dis kɔmɔn pan pipul dɛn we de yuz Altuviiio. Bɔt nɔ wɔri, yu dɔktɔ go de chɛk yu blɔd ɔltɛm fɔ si if dɛn tin ya we de mek yu nɔ ebul fɔ du sɔntin dɔn kam.
- If di inhibitors de na low level, di dɔktɔ kin inkrisayz di doz fɔ di mɛrɛsin.
- If yu inhibitor lɛvɛl tu ay, yu nɔ go ebul fɔ yuz Altuviiio igen. If dis apin, yu dɔktɔ go ɛksplen to yu ɔda tritmɛnt dɛn we dɛn mek fɔ pipul dɛn we gɛt inhibitors.
Wetin di stɔdi dɛn bin fɛn?
Stɔdi dɛn we dɛn dɔn du fɔ si aw Altuviiio de wok fayn dɔn gi rili gud rizɔlt. Lɛ wi luk am na wan simpul tebul.
| Stɔdi grup | Di men tin dɛn we dɛn dɔn fɛn |
|---|---|
| Big pipul ɛn yɔŋ pikin dɛn (we ol 12+ ia) . |
|
| Yɔŋ pikin dɛn (we nɔ rich 12 ia yet) . |
|
Dɛn rizɔlt ya sho se Altuviiio na wan mɛrɛsin we rili wok fɔ mek pɔsin nɔ gɛt blɔd ɛn fɔ kɔntrol blɔd if i apin.
Sɔm ɔda tin dɛn we yu fɔ no
- Aw kwik di mɛrɛsin kin wok?
Altuviiio de inkrεs yu factor VIII lεvεl dεm wantεm afta yu injεkt. Dis kin mek yu nɔ gɛt bɔku blɔd kwik kwik wan. Bɔt nɔ stɔp fɔ tek di mɛrɛsin if yu dɔktɔ nɔ advays yu . Fɔ mek yu factor VIII lɛvɛl go ɔp, yu nid fɔ tek di mɛrɛsin lɛk aw dɛn dɔn plan am ɛvri wik.
- I kin miks wit ɔda mɛrɛsin dɛn?
As wi no, dɛn nɔ ripɔt se Altuviiio de intarakt wit ɔda mɛrɛsin dɛn. Bɔt i impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek, ivin di vaytamɛn dɛn.
- Dis na spɛshal mɛrɛsin?
Yɛs. Altuviiio na wan ‘spɛshal’ mɛrɛsin. Dis min se i nɔ kin de na wan rɛgyula famasi, ɛn i kin nid fɔ gɛt am na ɔspitul spɛshal famasi ɔ tru wan sistɛm we gɔvmɛnt dɔn gi. Yu dɔktɔ go gayd yu pan dis.
Mɛsej we dɛn kin kɛr go na os
- Altuviiio na nyu mɛrɛsin we dɛn kin yuz fɔ mɛn ɛmofilia A, we dɛn kin gi am insay in bɛlɛ jɔs wan tɛm insay di wik.
- dis de εp fכ kip di Factor VIII lεvεl dεm hכy fכ lכng tεm εn i de mek di bכdi nכ de bכn wantɛm wantɛm.
- Stɔdi dɛn dɔn pruv se dis mɛrɛsin rili wok.
- Yu kin tek dis mɛrɛsin bak na os, fala yu dɔktɔ in advays ɛn afta yu dɔn tren yu fayn fayn wan.
- Ɔltɛm tɔk to yu dɔktɔ bɔt ɛni prɔblɛm, sayd ɛfɛkt, ɔ ɔda mɛrɛsin we yu de tek. Nɔ ɛva stɔp fɔ tek mɛrɛsin if yu nɔ gɛt dɔktɔ advays.
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